“Document, document, document. Simply write down exactly
what you do and why. Show that you are applying clinical
judgment to the situation. That is all there is to it.”
time start to recede. It is very easy for disease, and
injury to lead to isolation and an inability or desire to
contribute to the world around us.
Finding physicians empathetic to the pain that
you suffer has been frustrating. What kind of
reactions were you encountering?
The problem with having a chronic illness is that I
will never get better. I never see a physician with the
expectation of a cure, but rather for some idea that
might help to make things better. However, many
physicians expect patients to get better because of their
input. When they don’t, the doctor feels less compe-
tent and that is displaced onto the patient. I once had
a neurologist tell me that my problems were psychiat-
ric in spite of hard clinical and EMG findings. What
was my response? I actually said, “Great, because that
means I can get better and it means I can stop taking
these poisons.” I stopped taking my immunosuppres-
sants and within three months, I had a serious attack
and demyelinated my L5 nerve root. It was horribly
painful and disabling. I ended up being measured for a
wheelchair.
What was it about certain doctors that made you
want to continue in their care?
Given the relative rarity of my diseases, I have been
very fortunate to find a small handful of physicians
that I trust and that I have worked with, some for
more than 20 years. They listen, do not judge, think,
confess when they do not know something and find
out what they do not know. They have always been
there for me in my worst of times and have never
become frustrated because I get worse, not better.
They also respect the fact that I know more about my
diseases than they do, for the most part. They listen to
what I have to say, and include it in the clinical think-
ing process.
You have said that this opioid crisis has created
a situation of under treatment. Can you elaborate
on what you are seeing in your pain clinic?
The crisis is because of what physicians fear is over
treatment and they respond by creating a situation of
under treatment. Let me explain. Prior to the most
recent guidelines, the recommended upper level of
opioid dosing for treating chronic pain was 200 mg
of morphine equivalent. With the new guidelines, it
dropped to 50 mg preferred and 90 mg, if necessary.
However, many patients are still on doses of opioid
above the new guidelines because they started the
medications before the guidelines were created. Now,
prescribing physicians are concerned that the dose is
too high. In some cases, the physician becomes con-
cerned that these higher doses will bring them under
the scrutiny of the College. They tell the patient the
dose must be lowered and they proceed, regardless of
whether the patient agrees and sometimes regardless of
the impact the change in dose is having on a patient’s
function.
In response to this ‘crisis’, patients are reporting to me
that they do not know what to do. They recognize that
they must comply with their physician or their medica-
tion will be discontinued and then they will be in worse
trouble than they are in already. Many of them report
that because of the dose reduction, they cannot function.
They feel abandoned by their physician because the deci-
sion to lower the dose was done without their agreement.
They feel forced to do something and they feel that they
have no alternatives. A couple of my patients have re-
ported that this situation has stimulated suicidal thoughts
because they cannot think of another way out.
ISSUE 1, 2018 DIALOGUE
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